PDCD ADVOCACY
Write to your representative and demand change for PDCD.
It's time for Congress to listen to our voices! The more families that come together and demand change, the more likely Congress will be to address the pressing needs of PDCD families. You can make a difference by taking a simple step: sending a letter to your representative. Share with them the challenges faced by PDCD families and friends, emphasize the urgent need for improved treatment options, and increased funding for research.
How to write to your representative
Step 1:
Go to www.house.gov to find your representative.
Step 2:
Enter your zip code in the top search bar and click "Look Up." This will display the information for your House of Representatives member.
Step 3:
Click on the email icon under your representative's photo
Step 4:
Send an Email. We’ve linked a sample letter that you can easily customize with your details and send, or feel free to create your own. Please make sure to put your story, your needs, any difficulties you face with delayed diagnosis, access to care, access to proper equipment, insurance struggles, and everyday struggles.
Step 5:
Ask your family and friends to do the same!
Our Impact
As a result of the collective efforts of the Hope for PDCD parent board, we have made tremendous progress towards newborn screening for PDCD and increased funding for research
Two senators have written to the HRSA (Health Resources Service Administration) about the need for adding PDCD to the RUSP (Recommended Uniform Screening Panel).
We have pending applications to add PDCD to newborn screening in Pennsylvania and Mississippi, as well as a bill to add PDCD to newborn screening in Massachusetts
Established relationships with senators and representatives in Congress.
We have made tremendous progress, but we need your help. You can make a difference by writing your representative today!
